SATB2 Associated Syndrome is a neurodevelopmental condition requiring intervention and support from multiple health professionals at any given time. Often our families face the unknowns and are challenged with referrals and reports that are expensive and difficult to secure and understand. The rare disease population requires support from a multidisciplinary approach to treat the individual holistically and readily focus on the patient and family within mental health and other support services such as the NDIS within complex pathways and educational supports. Professionals who have an interest and who specialise in rare conditions are an absolute key to the quality of life for these individuals, families, and their wider community.